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Social MediaTom Evans2024-03-19T15:23:53-04:00

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Have you considered supporting the BDSRA Foundatio

Have you considered supporting the BDSRA Foundation with your Donor Advised Fund? BDSRA is a 501(c)3 and needs your grant distribution suggestions. Join other Batten advocates who direct those checks our way! Access the prewritten form by clicking the link in our bio to give to your money manager and ask that they let us know who suggested it. 🏦💵💼

#BattenAdvocatesForACure #DAF #BattenDisease #DonorAdvisedGrant #AnnualAppeal2024 #BDSRA

After many conversations, we finally convinced Lin

After many conversations, we finally convinced Linda to join our team three years ago, and she loves her role as much as we love her! In addition to keeping the office running, Linda enjoys working with all our families, organizing the family parties and mailing the party kits, and volunteering with her fellow grandparents at the conference each July. Please congratulate her on her third year with BDSRA!

#BattenAdvocatesForACure #WorkAnniversary #BattenDisease #RareDisease #OfficeManager

Happy Thanksgiving, Batten community! 🦃💛 We’re thankful each day for your support. We wish you a joyous day full of family, friends, food, and togetherness!

#BattenAdvocatesForACure #HappyThanksgiving #Thanksgiving #BattenDisease #Family #GiveThanks

Giving stock to the Foundation can potentially hel

Giving stock to the Foundation can potentially help you reduce future capital gains. While giving this way sounds complicated, our financial partners are here to help. Please consult your tax advisor. To learn more, please contact BDSRA President & CEO Amy Fenton Parker at amy@bdsrafoundation.org. Learn more and invest in our mission by clicking the link in our bio!

#BattenAdvocatesForACure #StockDonations #Donate #Give #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease

Giving Tuesday is in ONE WEEK! What’s a BDSRA pr

Giving Tuesday is in ONE WEEK! What’s a BDSRA project, initiative, or cause you’re passionate about? The @haleysheroesfoundation will raise funds on December 3 to sponsor childcare at the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska to help ensure it’ll come at no cost for Batten families. Whatever you’re passionate about, help raise funds for it this Giving Tuesday on December 3.

Visit our Giving Tuesday guide on our website to learn more about how you can spread the word and raise funds. Link in bio!

#GivingTuesday #BattenAdvocatesForACure #BattenDisease #BDSRA #HaleysHeroes #RareDisease #Giving #Donate #Fundraising

The holiday season can be a difficult time for ber

The holiday season can be a difficult time for bereaved Batten families. On Sunday, December 15, we invite you to our Holiday Grief Chat for bereaved Batten parents. This chat is an opportunity to gather with fellow bereaved Batten parents, discuss your grief, and support each other no matter where you are on your Grief journey. Get the full details by clicking the link in our bio.

#HolidayGriefChat #BattenDisease #RareDisease #Grief #Support #Bereaved #BDSRA #BattenAdvocatesForACure

Happiest birthday wishes go out to our staff rare

Happiest birthday wishes go out to our staff rare SIB and database manager, Noah! We wish we could celebrate with him in person, but since we can't, please take a moment to celebrate him with us. Many happy returns, Noah!

#BattenAdvocatesForACure

This week Amy, Ineka and Heather Dainiak, our new

This week Amy, Ineka and Heather Dainiak, our new Director of Family Support, attended the 8th meeting of the Translational Research Conference for the Management of NCLs in Chicago. There were rare disease families, scientists and industry experts in attendance. Topics of discussion included lessons learned, emerging therapeutic approaches in NCL preclinical and clinical research. "This was a terrific week of learning and relationship building. I am looking forward to sharing more with our community and implementing what I've learned here this week," says Amy.

#BattenAdvocatesForACure #BDSRA #BattenDisease #NCL #Research #BattenResearch #Clinical #Chicago

From the Batten Disease Global Research Initiative

From the Batten Disease Global Research Initiative to regularly scheduled communication, collaboration with our international partners is crucial to keeping our Batten community informed and supported. Your $5 Friday donations help make that possible. That’s the power of FIVE. Visit the link in our bio to give $5 today!

#5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure

The first day of the NCL Translational Research Co

The first day of the NCL Translational Research Conference carried the theme “Doing nothing is our biggest risk.” Researchers from within the Batten community and invited guests presented the importance of streamlining Natural History Studies, for all CLN types, worldwide. From there discussions regarding the use of AI to biomarkers to gene therapy were presented. The audience comprised of nearly 100 online and in person families, patient advocacy organizations, clinicians, researchers, and industry partners from around the globe.

#BattenAdvocatesForACure #BattenDisease #NCL #Research #BattenResearch #Clinical #Chicago

Just TWO years ago in this meeting room, the groun

Just TWO years ago in this meeting room, the groundwork was laid for revitalizing a crucial program for our Batten families. Fast forward, and we’ve transformed that vision into the Batten Disease Clinical Center of Excellence program! Today’s CoE meeting in Chicago, ahead of this week’s NCL Translational Research Conference, is a testament to our growth, innovation, and dedication.

#BattenAdvocatesForACure #BattenDisease #CoE #Research #Clinical #NCL #Chicago #RareDisease #Collaboration

BE ON THE LOOKOUT! 👀📪 Our Annual Appeal lett

BE ON THE LOOKOUT! 👀📪 Our Annual Appeal letter will be hitting your mailboxes soon. The letter from our President & CEO Amy Fenton Parker highlights our recent milestones and the different ways you can support our mission. Click the link in our bio to invest in our mission today!

#BattenAdvocatesForACure #AnnualAppeal #Letter #Donate #Give #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease

There are three ways to give to the BDSRA Foundati

There are three ways to give to the BDSRA Foundation using your life Insurance policy: name the Foundation as a beneficiary when you buy the policy, edit an existing policy to include us as the beneficiary or transfer ownership of the policy to the Foundation. To learn more, please contact BDSRA President & CEO Amy Fenton Parker at amy@bdsrafoundation.org or click the link in our bio!

#BattenAdvocatesForACure #LifeInsurance #Beneficiary #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease

NEW EVENT: Our Life Goes On program for bereaved B

NEW EVENT: Our Life Goes On program for bereaved Batten parents will hold a Holiday Grief Chat on Zoom on Sunday, December 15, at 7 PM EST. Grief during the holidays will be the focus of this session. If you’ve already signed up for a Grief Chat this year, you will receive multiple email reminders with the link to join. If you plan on attending for the first time, please complete this registration form (link in bio).

#HolidayGriefChat #BattenDisease #RareDisease #Grief #Support #Bereaved #BDSRA #BattenAdvocatesForACure

Two years have flown by since Noah joined our team

Two years have flown by since Noah joined our team, and we can't imagine what we'd do without him. From registration forms to lifeguarding, Noah stepped into his role and volunteered for so much more. He is integral to our fundraising efforts and our family register, and he also enjoys working with our Centers of Excellence and public speaking about his lived experience as a Rare SIB. If you have a moment to celebrate his anniversary with us, drop a comment below!

#BattenAdvocatesForACure #WorkAnniversary #BattenDisease #RareDisease #Sibling

The BDSRA Annual Family Conference is a staple wit

The BDSRA Annual Family Conference is a staple with our Batten disease community made possible by our donors. By giving to BDSRA, you help ensure this yearly tradition and the positive impact it has on families, SIBs, bereaved parents, researchers, clinicians, and staff continues. Give today by clicking the link in our bio or visiting BDSRAfoundation.org.

#BattenAdvocatesForACure #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease

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